POS1577-PARE WHAT PATIENTS VALUE AND NEED FROM HEALTHCARE IN THE DIAGNOSIS AND MANAGEMENT OF AXIAL SPONDYLOARTHRITIS
Authors: A. Drury, D. Webb, J. Hamilton, A. Hardy, L. Brady
Journal: Annals of the Rheumatic Diseases (2022)

Background The clinician’s understanding of what constitutes good quality care for axial spondyloarthritis (axial SpA) has been explored (1) and used to define quality standards (2,3). However, research into the patient perspective on what constitutes good quality care was lacking. The UK’s National Axial Spondyloarthritis Society (NASS) commissioned Headstrong Thinking, and its research partner, Community Research, to investigate this issue. Objectives The objectives of the research included: to explore the lived experience of those with an axial SpA diagnosis, to identify all the stages (domains) and milestones they identify and describe in their journey; to identify tangible person-centred indicators of “quality” in each of those stages, covering clinical care, patient care (non-clinical) and support for their mental health needs; to capture the everyday language used to articulate their values and needs around “quality”; and to understand possible differences between individual/subgroup experiences. Methods The project will use both qualitative and quantitative methods sequentially. This paper reports only on the qualitative stage of the project, which comprised twelve individual depth interviews, conducted online, across a broad spectrum of people living with axial SpA in the UK, allowing for variation in age, sex, socioeconomic status, presence of children, length of time since diagnosis, physical symptoms and comorbidities. Findings from the qualitative stage will inform the questionnaire for the quantitative stage (target n=1,500), which will seek to validate and refine initial hypotheses and quantify differences between sub-groups. Results This paper presents a rich understanding of the impacts on mental, emotional, cognitive and practical aspects of life with axial SpA. A detailed picture of a wide range of clinical, psychological and practical adverse impacts around delayed diagnosis is described. Further, the qualitative research found that, from the perspective of people with axial SpA, quality care consists of three elements, defined by patients as: to be seen, heard and believed; to experience a purposeful, consistent pathway of care, underpinned by effective administration and communication (rather than a series of care “snapshots”); and to be helped to know what they can do to help themselves, including making a care plan that evolves as needs change. Individuals with multiple or complex comorbidities were less likely to report having experienced good quality care, as they defined it, in part due to the challenges of accessing a joined-up patient journey and their greater reliance on an effective cross- disciplinary (NHS) healthcare system. Conclusion Patients define quality care in the diagnosis and management of axial SpA differently to clinicians. Professionals involved in the diagnosis and care of people living with axial SpA (including rheumatologists, but also those involved in the wider care of people living with axial Spa, such as physiotherapists and even mental health professionals) would benefit from a greater understanding of the patient perspective. The individual stories uncovered in this qualitative phase underline the importance of collecting and analysing quantitative data by demographics, life stage and by discrete phases in the diagnostic /ongoing patient (self) management journey. References [1]Kiltz U, Landewé RBM, van der Heijde D , et al Development of ASAS quality standards to improve the quality of health and care services for patients with axial spondyloarthritis Annals of the Rheumatic Diseases 2020; 79: 193-201. [2]ibid [3]National Institute for Health and Care Excellence (2018) Spondyloarthritis Quality Standard Disclosure of Interests None declared